Sjögren's

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    #Lupus #Fibromyalgia #sjogrens #IrritableBowelSyndromeIBS #IdiopathicThrombocytopenicPurpura #ChronicIllness #ChronicPain

    I have to be strong and push myself because it’s not worth the debilitating pain, nausea and fatigue once I stop moving. When I’m asked if I’m okay, my immediate response is “I’m fine”. I don’t want to waste anyone’s time to describe it when I know others are sicker than I am. Since my diagnosis 16yrs ago, self care is one thing I can’t seem to grasp. I push towards the positive because I refuse to allow my illnesses from keeping me from living and loving my life.
    We are all stronger than we think! 💕

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    #chronic Pain #Fibromyalgia #chronic fatigue # Guilt #mom of kids with ADHD, Bipolar, on the Spectrum # wife of a hoarder #sjogrens disease

    Hi it’s so great to find a community. I’ve been through a lot. I’m reading these posts from Mom’s of little ones. Hang in there! You’re doing fine. I had 3, worked full time as a Registered Nurse &was always struggling to juggle career and home life. I felt guilty for leaving my kids , felt like I didn’t have the energy for both. I had no idea at the time that I had Sjögren’s disease and fibromyalgia. I was always so exhausted during the whole bedtime routine - bath, books etc which we all loved but I secretly just wanted to get out of the way so that I could flop into bed.
    My kids are grown now . 31, 24, & 22. I miss those times so much. I cherished each moment with them when they were little and played with them a lot , but they do grow up so quickly. My husband & I are divorced. We got divorced when they were teens. I don’t see the boys as much . I still feel guilty, but just have to remember that Im doing the best I can. I love them more than life and they love me too.

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    Socks Are The New Manolos

    Sex and the City’s Carrie Bradshaw may have spent much of her time running around New York City in her Choos and Manolo Blahniks, but she also wisely once said “Maybe the best any of us can do is not to quit, play the hand we’ve been given, and accessorize the outfit we got.”

    Taking these words of wisdom and applying them to my limited spoonie life: I’ve found that the best accessory to pyjamas and lounge wear, is socks.

    I have fun socks. Socks with cats and dogs on the toes with which serve as playful, friendly greetings to front door visitors. Cutesy socks, put the doorstep world at ease.

    Then there are my colour block socks that look just as good on their own or peaking out of a pair of high tops. Colour block socks need no explanation. They announce to the world with the same brazen hutzpah as Samantha Jones, “Hello. My name is fabulous.”

    I have sparkly socks too. To misquote Charlotte York—before she became a Goldenblatt—these socks say “I’m not dead. Let’s Disco!” Unfortunately these aren’t the most practical of socks, so I wheel these out only on special occasions such as Christmas and New Year’s Eve.

    Occasions that call for a little extra sock game.

    I have no idea how to wash them so I’m going to step into the confessional box and pretend you can’t see me when I say this: I simply rinse them in cold water and air dry them for a few days, before nestling them in my sock drawer next to a bar of soap in the hope that the fresh soapy anti-miasma will do it’s thing.

    As an aside: I’m happy to discover that there is an actual song called “You’re Dead. Let’s Disco!” which I am adding to my funeral playlist, because 1) I’m a control freak, 2) when you’ve been sick for over a decade, you tend to think about these things, and 3) I don’t trust my other half to get it right… some things never change, like my cynical Miranda Hobbes personality.

    But back to socks. I also own the gold standard, the Manolos of the sock world if you will; the pure cashmere sock.

    You know the kind. They adorn the feet of influencers lounging around their houses looking effortlessly chic clutching large glasses of red wine while daring to wear white jeans, while cute young offspring wander around wearing matching outfits. And there’s just enough mismatching design elements that you just know they and their interior decorators put many design hours into making it look like this too was effortlessly thrown together so that everything—chicly of course—oozes with just the right amount of enthusiasm “Look. I’m not that different from you. If you buy these things tagged in my post that have been gifted to me, you too can look as effortlessly cool and chic as I do.” Basically what former socialite Laney Berlin from the baby shower episode would be doing if she was on Instagram.

    Alas, like the mythic Mary Jane Manolos that Carrie found in the Vogue closet that were a size too small, I too discovered that washable cashmere socks are an urban sock myth. After ever so gently coaxing them into a lingerie wash bag—and putting them on a cold wash as instructed—they still emerged a size smaller, covered in a pox of pilled wool.

    The irony was not lost on me: my costly cashmere socks as with all my other expensive endeavours to improve my health—like supplements, infrared sauna blankets, treatments, and that one time I built a four cornered shrine dedicated to Manon, willing him to take my ailments and inner scars, had failed miserably. Okay, I may have made up the Manon part, but the rest is all true.

    Sadomasochistic that I am, I still have some cashmere socks lined up in my sock drawer like little ladies in waiting in anticipation of the day a spoonie royal like Lady Gaga, Sia, or Venus Williams should decide to pay me a visit, I will be suitably prepared.

    For as Carrie Bradshaw never said, but might have if she were chronically ill, “When your life is at a standstill your sock game benefits.”

    #SpoonieFashion #Spoonie #chronicallyill #Fashion #GravesDisease #Fibromyalgia #sjogrens #ChronicFatigue #ChronicFatigueSyndrome #bedbound #thisismetrying

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    Great Information!!

    I just wanted to share a book that has great information about Sjogrens and other chronic illnesses that we tend to develop. #sjogrens

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    Let me introduce myself

    About me…… I’m a hot mess. Diagnosed with #sjogrens #Anxiety #depression. I am waiting on results of tests to find out what other glorious things I have. But my diagnosis is not who I am, just what led me here. I am a mom, grandma, partner, functional artist, baker. I have tats and a dirty mouth. My mind is worse, and sometimes it’s just a mine field even I can’t cross. #sjogrens #Anxiety #ChronicDepression

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    Outside Looking In

    Autoimmune #sjogrens #Sj ögrens#Depression #PTSD #rheumatoid arthritis#Eczema #multiple surgeries (21)#Orthopedic transplants#adrenal insufficiency#afibillation #osteohypotension #IBS #dumping syndrome#jackhammer esophagus

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    Lucky

    Every morning when I don't want to get out of bed (I have 20 conditions), I have to tell myself over & over, how LUCKY I am to still be alive. #HEDS #addisons #fibromyalga #indwellingcatheter #LungDisease #boweldisease
    #svt #thyroidfailure #anaemia #Photophobia #Cataracts #SjogrensSyndrome #BreastCancer #metabolicmyopathy #fibromyalga TMD/TMJ etc....

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    Undiagnosed neuropathic pain.

    I turned 26 this year and have been suffering from chronic pain since I was around 19

    Lots and back and forth with multiple specialists and doctors appointments has eventually lead me to a diagnosis for my hip pain - I have hip dysplasia that has somehow gone un-diagnosed since birth.. I have been told I need to have PAO surgery to correct this.

    However, alongside this hip pain I have been suffering from many neurological symptoms which seems to have been swept under the rug since my DHD diagnosis. I am still chronically ill underneath my hip pain and no one seems to be doing anything about it.

    My nuerological symptoms include the following:
    - Sickness/nausea
    - Dizziness
    - Hyperosmia
    - Neuropathic pain in my legs, arms, shoulders
    - Complete numbness/change of sensation in my shoulder blades and between T7-T12
    - Numbness that radiates down my left leg
    - Muscle spasms/ spacsticity in legs
    - Bladder issues
    - Chronic fatigue
    - Balance issues
    - Cognitive issues such as thinking and concentrating
    - Occassional blurred vision/ vision changes
    - Migranes

    I have been seen by and dismissed by numberous doctors and consultants, no one can seem to figure out what is wrong with me. Some of them have actually accused me of making my symptoms up.

    I have seen 2x Rheumatologists that investigated Arthrtitis and Lupus, both concluded that there was nothing wrong with me at all whatsoever.. I have a positive ANA and Anti-dsDNA but still no diagnosis. Discharged by both of them with no further action.

    I am currently under the care of an Orthopaedic Surgeon (for my hip) who seems to think my symptoms point toward Fibromyalgia but obviously this would be diagnosed by a rheumatologist and I have already been discharged by two.

    I am currently on a waiting list to see a neurologist. I have been on this waiting list since May and I am lead to believe I will be waiting quite a few months yet.

    I feel incredibly alone in my journey. Everyone I know who is my age have no idea what it is like to deal with chronic pain, let alone the burden of an undiagnosed illness. Every time I attempt to talk to anyone about my ailments, people are dismissive, don’t understand or are simply uninterested.

    Can anyone offer any advice ? I feel hopeless. I have no support. 😢

    #ChronicPain #DevelopmentalDysplasiaOfTheHip #DegenerativeDiscDisease #Fibromyalgia #MultipleSclerosis #MyalgicEncephalomyelitis #ChronicIllness #Migraine #Lupus #Arthritis #CervicalSpondylosis #AnkylosingSpondylitis #Neuropathy #PeripheralNeuropathy #AutoimmuneDisease #BackPain #ComplexRegionalPainSyndrome #Undiagnosed #RheumatoidArthritis #sjogrens

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    Frustrated

    I am going to be without a therapist again... Community Mental Health care at it's finest. This the this time since 2019. So over it.
    #ChronicDepression #Fibromyalgia #suicidal Ideation #sjogrens #ChronicEpsteinBarrVirus

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    New scans

    Tomorrow morning I go in for new CT scans of my jaw and neck to check my salivary glands. The ones under my jaw and under my ears have been continuously swollen the last few years, but the ones on the right have started hurting. Given the amount of pain medication I take for other things, I am a little worried what this pain could be. So I’m hoping for the best but a little concerned. If any of you have some positive thoughts to send my way I would appreciate it. #SjogrensSyndrome